Introduction

In the case, Ms. L was found to be carrying a fetus with hypoplastic left heart syndrome (HLHS) at 34 weeks of gestation. She and her family, having been informed and having considered the options, elected to pursue neonatal heart transplantation, rather than “palliative” surgery (the Norwood sequence of operations) or a non-surgical approach. (We can only assume Ms. L and her husband had the latter alternative made available to them.)

Unfortunately, the baby did not do as well as do some newborns with HLHS treated with prostaglandin. At three weeks of age, because of a failing cardiovascular system and no available organ for transplantation, Baby L had a first-stage Norwood operation. Seizures some time in the postoperative period led to the diagnosis of cerebral infarction. At six months of age, he had a second-stage procedure and awaited the third stage at the time of the case report. He is said to be “doing very well.”

Dr. Chin argues that Baby L should have had palliative surgery in the days immediately following birth, rather than await transplantation. He believes this to be so because (1) survival following the Norwood sequence approximates that following neonatal transplantation; (2) the Norwood approach involves lower (financial) costs; and (3) the inadequate supply of hearts for infant transplantation should be reserved for patients who have no alternative treatments.

Many think that medical treatment for children is altogether different from that for adults. On the one hand, pediatrics seems to be about maintaining inherent good health through disease prevention, such as immunizations. On the other hand, we think of the obvious, even miraculous, advances in therapies for some childhood cancers (especially the most common, acute lymphocytic leukemia) and for disorders of the prematurely born. Unfortunately, pediatrics also has a less optimistic side. Some congenital anomalies, genetic disorders, and malignancies have not yet yielded to the press of modern medical science. Current technology and medical skill are unable to provide a reliably good outcome for very small preterm infants, certainly those born at 22 weeks of gestation or earlier, and a varying proportion of those born up to 26 weeks of gestation. The scourges of accidental injury, severe physical abuse, and AIDS continue to provide both enormous challenges and a depressing reminder of the limits of treatment.

Two features distinguish the futility confrontation in pediatrics faced by health care providers and the public from the confrontation in the rest of medicine. These are (1) our deeply held belief and hope that childhood should be different and that children should not die before some imaginary natural life span and (2) medical uncertainty in pediatrics, that is, the difficulty in predicting eventual outcomes, especially those pertaining to neurodevelopment. With these thoughts in mind, some issues in the debate over futile treatment in pediatrics are discussed.

In 1979 when undergraduates applied in record numbers for admission to medical school, AIDS was not a clinical and diagnostic category. In 1990 when the applications to medical schools are plummeting, AIDS is unarguably with us, and not just as a clinical entity. AIDS has become what the French anthropologist Marcel Mauss called a “total social phenomenon — one whose transactions are at once economic, juridical, moral, aesthetic, religious and mythological, and whose meaning cannot, therefore, be adequately described from the point of view of any single discipline” (Hyde 1979). For cultural analysts, present and future, the 1980s and beyond are the AIDS years.

This chapter is about the impact of AIDS on the shop floor of the academic urban hospital, an attempt to understand the impact of AIDS on everyday practices of doctors providing inpatient care. Following Mauss, we wish to view AIDS as a total social phenomenon rather than as a mere disease. Procedurally, we shall concentrate on the house officer (someone who, after graduation from medical school, participates in medical specialty training) and the medical student to see how this new infectious disease changes the content of everyday work and the education of apprentice physicians learning how to doctor and to assume the social responsibilities of the role of the physician. We are going to look at professional and occupational culture as a set of shop-floor practices and beliefs about work.